Rare Disease Day takes place on the last day of February each year. This year the Genetic Support Network of Victoria will hold a virtual event to raise awareness amongst the general public and our community of Genetic, Undiagnosed and Rare Disease patients, their families, support groups, clinicians and researchers, health professionals and anyone who has an interest in rare diseases.
For 2022 our Rare Disease Day event will focus on “Global Themes, Local Action” where we plan to dive into themes identified across the international environment and how they may shape and inform the challenges Australian Genetic, Undiagnosed and Rare Disease communities will face in 2022.
The event will open with a brief introduction from our CEO Monica Ferrie, before the morning session shares with you all a series of conversations presented by international rare disease experts from Rare Disease International(RDI), Rare Diseases Europe (EURORDIS), Genetic Alliance America & UK and Asia Pacific Alliance of Rare Disease Organisations(APARDO), and Director of the Murdoch Children’s Research Institute Kathryn North.
As experts in rare disease across the globe they will share with us their perspective on the challenges facing the Australian rare disease landscape in 2022 and create the framework for our afternoon workshop session.
AFTERNOON WORKSHOP SESSION FOR PATIENT SUPPORT GROUPS (RSVP REQUIRED):
From 12pm we will present break-out group sessions on 5 key topics identified by our international speakers and moderated by leaders in their field across Australia. We expect the sessions to include a two-way exchange on how patient support groups would like to collaborate with each area of expertise to advance positive outcomes. Registration for this session is open to everyone and the genetic, undiagnosed and rare disease community. The groups are:
1. Partnering with Government
2. Industry representatives from Diagnostics & Pathology- , Data & Technology, Pharmaceuticals
3. Genomics Education
5. Integrated Healthcare
For a complete Bio on all our speakers
You can also view our Rare Disease Day message with a snapshot of insights from our community https://youtu.be/PTf8eX4FX2c